mouth sores and chemo

pink05

Hi everyone,

Hope you all had a great holiday. My dad had his CAT scan on Monday. We won't get the results until this Monday. Thank you for all of your prayers. I ask that you please keep praying for him.

Anyway, I haven't really read too much on this site about mouth sores during chemo. My dad has some pretty bad ones and is having a hard time eating. I feel bad for him because he said he is very frustrated with this and doesn't want to do chemo anymore. Do any of you out there have any experience with this? If so, is there anything that my dad can do which will ease the pain of his sores or even help to eliminate them? The nurse at the clinic said that my dad should frequently rinse with water and baking soda, use a soft bristle tooth brush, and stay away from things like listerine. But he didn't tell us what my dad should do once the mouth sores appear. My dad also still gets neuropathy in his hands and says he has lost his sense of taste, but I suspect he will continue to experience that for a while. My dad's onc stopped the oxiplatin because he said that once you reach a certain point, the oxi starts to produce pretty unbearable side effects. Well, my dad's been on it for 5 months now. The onc also told me that my dad's condition is chronic and he will have to stay on chemo forever with occasional 4 week breaks in between. I struggle with this because I know people who are in remission and go off chemo. My dad doesn't even realize that he will have to be on chemo forever. I don't have the heart to tell him because he will get so upset and I'm afraid he will just give up. Anyway, thanks for listening. I could sure use some advice.

Thanks,

-Lee-

terril

Hi Lee!
I found that when I eat foods that are alkaline, I really do not have major mouth sores. Those foods and drinks that are acidic seem to bring on the sores. You may want to have your dad try this. Terri

taraHK

I had mouth sores with my chemo. Very painful and hard to eat. I used a mouthwash *alcohol free*, twice a day (one my oncologist recommended) throughout the chemo. And, when the mouth sores were bad, they gave me a steroid cream. Twice a day for 48 hrs only. That really helped a lot.

I was on folfox (5FU oxaliplatin). I made it thro 11 out fo 12 cycles. Yes, that oxaliplatin is tough. I got neuropathy in my fingers and toes. The fingers are 100% fine now -- I still have tingles in my toes (6 mos after stopping) -- but not bad.
Sending prayers and best wishes for those CAT scan results!

KathiM

Yes, Lee, I had mouth sores...non alcohol mouthwash did the trick...Also, there is a concoction that the oncs can perscribe...can't think of the name...
Mouth sores are usually caused from stomach upset, and if he keeps to a pretty safe diet, he should do better...and I know this is my Favorite thing for chemo...but it worked....as MUCH WATER as he can tolerate...flushes the system....especially the day before, of, and after infusion.
PLEASE don't tell dad about the lifetime of chemo...you are right, he will get VERY discouraged!!!!! That's one of the tough things about being a caregiver, knowing when NOT to share the facts...
Hugs to you and dad!
Kathi

vinny3

I had mouth sores with the 5 FU. It is very uncomfortable. The hospital I go to had something they made up called " magic mouthwash". I know one of the ingredients is viscous lidocaine which is a local anesthetic. It helped for a short period of time. I will try to find out what else is in it but I think the lidocaine is the thing that causes numbing.

Keep encouraging him and make sure you are getting support as well. You are doing a great job in helping him.

****

ron50

Hi Pink,
I had 5fu for nearly a year,on a weekly basis .I used a mix of sodium bi-carb and salt as a mouthwash and sucked on ice while I was having the chem . It reduced blood flow to the area so not so much chemo got thru to the area,Cheers Ron.

lfondots63

Hi Lee,

I stopped reading your post after the baking soda. I got a great mouthwash called biotene. It helps with the mouth sores since there is no alchol in it. It is also good for dry mouth. I have it and sometimes get mouthsores. It also helps sore throats from chemo. Take care and give your dad a big HUG from me.

Lisa

jsabol

Hi Lee,
My onc ordered something called "super mouthwash" which was a special prep of, I think a benedryl and lidocaine and anti-fungal thing. It was a swish and spit, and helped somewhat.
I also developed REALLY painful splits in the corners of my mouth, which reopened every time I opened my mouth. A dermatologist friend diagnosed that as a separate fungal infection, which responded really quickly to another anti-fungal cream. Keep pressing your oncs office for treatment; these "little" things are huge when you are the one affected!
Best of luck to you and dad; hope he feels better! Judy

dash4

Hi,
I am a caregiver for my husband---also a dental hygienist---the moment he was diagnosed--10/04 I switched him to Prevident 5000--prescription fluoride toothpaste from Colgate and all the Biotene products. They are alcohol free and have enzymes to replace what is missing when you get a dry mouth. They have a mouthwash, chewing gum, saliva substitute, and toothpaste. You can buy almost anywhere--but let me know if you cannot find it. The prevident helps to remineralize teeth which break down so much easier with a dry mouth and chemo side effects.

Well, (knock on wood) but my husband has not had any mouth sores or issues--he had 7 months of 5 FU, leucovorin, avastin and irinotecan. Now he is on his ninth month of erbitux and irinotecan. I could go on and on but if anyone has any "mouth" questions--please ask and what I don't know I will find out for you. Oncologists often forget to take care of the mouth and it is so important for all aspects of the battle against cancer. Well off my soap box and hope this helps.
Dash

jams67

dash4 said:

Hi,
I am a caregiver for my husband---also a dental hygienist---the moment he was diagnosed--10/04 I switched him to Prevident 5000--prescription fluoride toothpaste from Colgate and all the Biotene products. They are alcohol free and have enzymes to replace what is missing when you get a dry mouth. They have a mouthwash, chewing gum, saliva substitute, and toothpaste. You can buy almost anywhere--but let me know if you cannot find it. The prevident helps to remineralize teeth which break down so much easier with a dry mouth and chemo side effects.

Well, (knock on wood) but my husband has not had any mouth sores or issues--he had 7 months of 5 FU, leucovorin, avastin and irinotecan. Now he is on his ninth month of erbitux and irinotecan. I could go on and on but if anyone has any "mouth" questions--please ask and what I don't know I will find out for you. Oncologists often forget to take care of the mouth and it is so important for all aspects of the battle against cancer. Well off my soap box and hope this helps.
Dash

I wish someone had told me earlier in my treatment about the Biotene toothpaste. It was so much less painful than my regular toothpaste! I didn't discover it until well into chemo and had to find it on my own. This site is great for this kind of info that the doctors and nurses forget to tell you. I also used (1 tablespoon salt and 1 tablespoon soda in 1 quart of water) mouth washes which my onc did tell me about and that helped. jams